Needles are scarey for all of us and really scarey for our small children who don't understand why they have to get "stuck" to feel better. It doesn't make much sense to them. Here they are bleeding and hurt and the one they trust the most (mommy or daddy) is holding them down while some stranger (the nurse or lab tech) is trying to inflict even more pain on them. And sometimes when they aren't successful they try and try again. Tension is high! Then, when the child looks to find comfort in their parents eyes; all they find is stress and more fear. What a teriffying experience for them. And what a heart wrentching experience for us too. We are made to protect our children. But what is a parent to do? Our child needs this medication in order to stop the bleeding and in some cases to save their life.
I am sure many of you can tell us story after horrifying story (I have numerous ones myself). But I want to encourage you with a few things. First of all: You are NOT a bad parent, you are trying to do what is best for your child. Do not listen to the uninformed, judgemental chatter of others who don't have a clue what hemophilia is. I know it is often hard to do, but it is a must if you are truly going to benefit your child. Second: Get informed, get educated, read, ask questions, you need to become your child's best advocate. Because no one knows your child like you do! And I also want to mention a wonderful, helpful product that you can use to help cut down on the stress and pain of needle sticks for your child. Actually there are two; one is called LMX and the other is EMLA. They are topical numbing creams. They help numb the skin above where you are going to stick a vein so the child does not initially feel the stick. You can talk to your HTC doctor about getting some or your Home Care company. The cream is not a cure all, but it sure does help with the pain involved.
Needles unfortantely are going to be a part of their lives...but whatever we can do to "make it better" will definately help.
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2 comments:
Thank you for the words of comfort. My husband and I are NOT looking forward to those days. Reece is 8mo old now and we haven't had to have any treatments since he was circumcised in the NICU (thank goodness)! Having a 4yr old daughter though, I can only imagine how hard it will be to hold down and find a vein in my baby when the time comes. It's so nice to see though that you are all proof that everyone survives and isn't scared for life with this trauma. Thank you again!
My son was on demand when he was younger, so we did not home infuse untill he was about 5 years old
we would take to infusion therapy at our local hospital or to the treatment center, at times the emergency room . I was not informed enough to use a home care company to help with this at the time. So please check in to your options and ask questions to see what works for your family best. If you are not ready for home infusion that is ok, work it out with your resources.
I found that a routine worked best for us regardless of where we were infused.
There is truth to scared veins hide . I would have my son sit and look at a magazine or book have a juice (hydrate) and calm down. We would then put emla on his hands both just in case and it did it's magic while we had a juice and read our book. Then we would have my son tell us what we what to do, I felt that way he learned and felt he had some control. Then one day he said at the end, I will have a Juice please. So we added Juice to the end of infusion or some sort of snack as directed.
Remember everyone is different, but in the end they all need the infusion, so you need to experiement and see what works best for you, I used to infuse at night because that worked best for us. Just talk to your HTC they are part of your team, just remember you are in charge of the team so do not be afraid to ask all the questions, and call back if you forgot a few, or make suggestions that you might think will work.
Trust me it will work out, all you need is a positive attitude and a smile. Have a great day.
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